Patient-Centred Research Priorities Relating to Healthcare of Frail Older Canadians

Transcription

1 Patient-Centred Research Priorities Relating to Healthcare of Frail Older Canadians Canadian Frailty Network Annual National Conference April 24, 2017 Jennifer Bethell, Martine Puts, Katherine McGilton,

2 Elicit top 10 research priorities from Canadians affected by frailty Share priorities with researchers and research funders More research addressing priorities of Canadians affected by frailty

3 Outline Context Research priority-setting Patient engagement James Lind Alliance (JLA) Priority setting partnerships Principles Process Canadian Frailty Priority-Setting Partnership Steering Group Partner organisations Identifying research questions Respondent data Next steps

4 Context: Research priority-setting Research priorities are typically set by researchers, less often involving other knowledge users (including patients, care providers, policy makers, etc.)

5 Context: Patient engagement Patient Engagement: Meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Depending on the context patient-oriented research may also engage people who bring the collective voice of specific, affected communities. From: Canadian Institutes of Health Research (CIHR),

6 Context: Patient engagement Patient: An overarching term inclusive of individuals with personal experience of a health issue and informal caregivers, including family and friends. From: Canadian Institutes of Health Research (CIHR),

7 Context: Patient engagement Why?: Arguments for patient engagement include: Methodological (i.e., better, more relevant research and knowledge translation greater impact) Moral/ethical (i.e., democratizing the allocation of scarce research funds) Wilson P et al. ReseArch with Patient and Public involvement: a RealisT evaluation the RAPPORT study. Southampton (UK): NIHR Journals Library; 2015 Sep.

8 James Lind Alliance (JLA)

9 James Lind Alliance Priority Setting Partnerships JLA: non-profit, established in 2004, funded by UK National Institute for Health Research (NIHR) Priority setting partnerships bring patients, their carers and clinicians together to identify and prioritize unanswered questions about the effects of treatments in specific conditions or areas of healthcare for research, using the JLA methods James Lind Alliance,

10 JLA Principles Transparency of process Inclusion of patient, carer and clinician interests and perspectives Exclusion of non-clinician researchers for voting purposes Exclusion of groups that have significant competing interests, e.g., pharma Maintained audit trail of original submitted uncertainties, to final prioritized list

11 JLA Process Convene Steering Group Identify and invite potential partner organisations Identify research questions Agree on top 10 priorities at an in-person workshop Disseminate top 10 research priorities

12 Canadian Frailty Priority-Setting Partnership

13 Canadian Frailty Priority Setting Partnership: Steering Group Chair: Katherine McGilton Members: Melissa Andrew, Geriatrician, Dalhousie University Patricia Ayala, Information Specialist, University of Toronto Howard Bergman, Family physician, McGill University Andy Choate, patient, patient advisor committee, Cancer Care Ontario volunteer Barry Clarke, Medical Director, Continuing Care, Nova Scotia Health Authority Katherine Cowan, James Lind Alliance (JLA) Senior Advisor, England Carlo DeAngelis, Pharmacist, Clinician Scientist, Sunnybrook Health Sciences Centre Chris Frank, Family physician, Queens University Jacobi Elliott, Project Manager, GHS Research Group; School of Public Health & Health Systems, University of Waterloo Marg Fitch, Associate Professor, Lawrence S. Bloomberg Faculty of Nursing; Expert Lead, Patient Reported Outcomes, Canadian Partnership Against Cancer, Sunnybrook Health Sciences Centre Kathryn Hominick, Clinical Social Worker Geriatrics, Nova Scotia Health Authority Margaret Keatings, Caregiver Janet McElhaney, Geriatrician, Health Science North (Sudbury) Sandra McKay, Manager of Research & Evaluation, VHA Home Healthcare Eric Pitters, patient, mentor for the Leukemia & Lymphoma Society and Lymphoma Canada Jenny Ploeg, Professor, School of Nursing and Scientific Director of Aging, McMaster University Souraya Sidani, Professor & Canada Research Chair at the School of Nursing, Ryerson UniversityInstitute The study team: Jen Bethell, Postdoctoral Research Fellow, Principal Investigagtor, Toronto Rehabilitation Institute Katherine McGilton, Principal Investigator & Senior Scientist, Toronto Rehabilitation Institute, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto Martine Puts, Principal Investigator & Assistant professor, CIHR New Investigator, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto Schroder Sattar, study coordinator/doctoral student, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto

14 Canadian Frailty Priority Setting Partnership: Partner organisations Alberta Continuing Care Association BC Care Providers Association CACC-Central East CACC-Central West CCAC-Hamilton Niagara Haldimand Brant Canadian Academy of Geriatric Psychiatry Canadian Association for Rural and Remote Nursing Canadian Association of Critical Care Nurses Canadian Association of Occupational Therapists Canadian Association of Social Workers Canadian Geriatrics Society Canadian Hospice Palliative Care Association Canadian Society of Consultant Pharmacists Canadian Society of Hospital Pharmacists Canadian Society of Palliative Care Physicians Canadian Society of Respiratory Therapists Canadian Therapeutic Recreation Association Clinical Nurse Specialist Association of Canada The College of Family Physicians of Canada Community Health Nurses of Canada Denominational Health Association Geriatric Education and Research in Aging Sciences (GERAS) GTA Rehab Network Heart and Stroke Foundation of Canada Hypertension Canada National Initiative for the Care of the Elderly (NICE) New Brunswick Association of Nursing Homes Ontario Long Term Care Association Speech-Language and Audiology Canada The 519 Church Street Community Centre The Arthritis Society The Canadian Cancer Survivor Network The Canadian Orthopedic Foundation The Kidney Foundation of Canada The Lung Association/ Ontario Respiratory Care Society National Association of Federal Retirees The North East Specialized Geriatric Centre

15 Canadian Frailty Priority Setting Partnership: Identifying research questions Questionnaire: developed from JLA template, other PSPs and external input, including from Seniors Helping as Research Partners (SHARP) group, coordinated by Jacobi Elliott. promoted to Canadians affected by frailty, including Older adults who are concerned about frailty Friends, family and caregivers of frail older adults Health and social care providers (e.g. doctors, nurses, occupational therapists, personal support workers, pharmacists, social workers, etc) who work with frail older adults and/or can advocate for them People not yet affected by frailty but who are interested in the topic available in English and French on-line ( limesurvey ) and in paper format (with postage paid envelope) open from March 2017 to May 2017

16 Canadian Frailty Priority Setting Partnership: Identifying research questions What question(s) do you have about care, support and treatment for older adults who are frail that could help them to live as well as possible? Think about your own personal and/or professional experience with frailty. This is what makes you the expert.

17 Canadian Frailty Priority Setting Partnership: Identifying research questions Surveys sent out Reponses will be turned into questions merged questions questions (for interim prioritization) questions (for in-person workshop) top 10 Where we are now

18 Which of the following best describes you or the members of your pair or group? (check all that apply) n % Older adults concerned with frailty Partner, relative or friend of a frail older adult Caregiver or former caregiver of a frail older adult Health and/or social care provider Nurse Occupational therapist Pharmacist Physician Physiotherapist Personal support worker, care aide or community health worker Recreation therapist Social worker Other Older adult with no direct experience of frailty, but interested in it

19 Which part of Canada do you live in?0 n % Alberta British Columbia Manitoba New Brunswick NewFoundland and Labrador 1.59 Northwest Territories 0 0 Nova Scotia Nunavut 0 0 Ontario Prince Edward Island Quebec Saskatchewan Yukon 0 0

20 Next steps 170 completed surveys gathering questions merged questions questions (for interim prioritization) questions (for in-person workshop) top 10 Where we are now

21 Next steps: continued Convene Steering Group Identify and invite potential partner organisations Identify research questions Agree on top 10 priorities at an in-person workshop Disseminate top 10 research priorities

22 Thank you! Katherine McGilton Toronto Rehabilitation Institute University Health Network Bickle Centre, 130 Dunn Ave Toronto, ON M6K 2R8 or